VOICES - Issue 02 - Perspectives from Community Liaison Officers
An e-newsletter presenting community perspectives on clinical research...
The year 2017 was eventful for Africa in HIV vaccine research and development. The announcement that new HIV vaccine regimen generated antibody responses in 100 percent of volunteers in an early stage clinical trial led by Janssen Pharmaceuticals and supported by IAVI and its clinical research center (CRC) partners in Africa, infused new hopes for an effective HIV vaccine. Important insights into HIV vaccine design arose from a study led by IAVI and The Scripps Research Institute (TSRI). The study used samples from an African volunteer carrying HIV subtype-A, and demonstrated how some human beings generate powerful, HIV-blocking antibodies. A large-scale clinical trial supported by the National Institutes of Health (NIH), and launched by the HIV Vaccine Trials Network (HVTN) in South Africa with 5,400 volunteers, began a three-year assessment of the efficacy of a new version of the only HIV vaccine candidate ever shown to provide some protection against the virus. None of these milestones would have been possible without the effective engagement of the communities in which the research is being conducted.
In this issue of VOICES, we turn the spotlight on the innovative approaches used by Community Liaison Officers in several different settings: gaining the trust of high-risk fishing communities; building on community strengths to encourage participation in research; improving their skills in incorporating gender issues in clinical research; and exploring the use of mobile technology to overcome the barriers between men who have sex with men (MSM) and critical health services.
Associate Director Advocacy, Policy, and Communications
International AIDS Vaccine Initiative (IAVI)
Mathias Wambuzi - Uganda Virus Research Institute (UVRI)
As a Community Liaison Officer, I have found that working with fishing communities on Lake Victoria can be dramatically different from working with other communities. People in fishing communities have a risk of HIV infection that is four to five times greater than the general population. What's more, they face everyday difficulties unique to the remote communities on the lake, including poverty, alcoholism, transactional sex, a lack of access to health care, and scarce information about HIV prevention and treatment.
Mathias Wambuzi on Kiimi Island in Lake Victoria handing out blankets for disaster relief after a recent fire devastated the community.
Young women and men migrate to fishing communities from across East Africa because of the potential to earn a living, either by catching or processing fish or by providing a service to the fishermen. Everyone's work is risky; the waters of Lake Victoria can be choppy and many fishermen don't know how to swim. Fishermen are out for long and arduous hours of the night and into early morning, often in open wooden canoes that are in poor repair. Even those who aren't catching fish face the dangers of Lake Victoria, sometimes needing to cross the water to access health care and other services.
But the riskiest time for HIV transmission comes when fishermen return to their island after work and are paid cash for the fish they have harvested. Many spend their small wages on gambling, drink, and transactional sex where the absence of a condom becomes a tool for negotiating a higher price. Women with limited options to support themselves often turn to sex work, which directly and indirectly contributes to the spread of HIV. The stigma surrounding HIV/AIDS exacerbates the challenges of discussing HIV prevention. Even when individuals know they are infected with HIV, the scarcity of medical services on the islands makes obtaining antiretroviral treatment difficult. Given these conditions, engaging the fishing communities on Lake Victoria can be very challenging – but not impossible.
Despite knowing the possible benefits of HIV prevention research to such communities, Community Liaison Officers must remember that the trust of these marginalized community members must not be taken for granted – we have to earn it. Gaining the assistance of recognized leadership has proved essential to securing the trust of fishermen and their families, whom being highly marginalized are difficult to reach. By engaging island leadership, we have been able to help individuals recognize their risky behaviors, address stigma surrounding HIV testing and treatment, and contribute to healthier, more self-sufficient communities. The secret has been in framing our intervention as empowerment of the fishermen, their partners, and sex workers. Otherwise, many community members would ignore our efforts.
Indeed, UVRI-IAVI has invested heavily in establishing and strengthening grass root communications and mobilization structures to sustainably support HIV prevention research among these populations. Village Health Teams, peer leaders, and Beach Management Units, among others play a critical and pivotal role in building community linkages and partnerships for HIV prevention research.
Yet perhaps most important has been the need to demonstrate that we are working in the fishing communities for the right reasons, that our engagement will be sustained, and that this community engagement is done within the Good Participatory Practices framework. These communities are also being given the opportunity – and actively involved – in shaping their own destiny. Too often, the approach has been to see communities as laboratories. I believe that is only when we approach community engagement as community development that can we meaningfully engage these communities and help stop the epidemic.
Ntando Yola – Desmond Tutu HIV Foundation
When working among communities affected by the AIDS epidemic, it is important to remember that their first priority is not participating in research or clinical trials, but finding a way to live. Many of these communities contend with serious problems – like unemployment, poverty, crime, violence, and other hardships. Thinking about HIV falls somewhere at the bottom of their list of daily concerns. That said, however, focusing on their problems rather than on their strengths communicates to a community that they are not a partner in research, thus negatively impacting recruitment and enrollment efforts.
Ntando Yola makes a presentation during the 2017 international Conference on AIDS and STIs in Africa.
The Asset-Based Community Development (ABCD) approach to working with and engaging communities focuses on community strengths and potential. It emphasizes assets, not deficiencies, and can help scientists and Community Liaison Officers show potential trial volunteers the benefits of participating in research. Remembering that these are individuals – and not numbers – is essential to accomplishing this. Our role is not just gathering data, but also ensuring that our work in counseling, testing, treatment, and referral is beneficial to the people we're trying to help.
In our efforts to effectively utilize ABCD, there are a few things we keep in mind:
- First, we need to document the lessons we've learned so we can remember both our successes and failures to inform future approaches. By focusing on ways to emphasize existing positive aspects of a community, we can accomplish more, and so can they. Sometimes, we are understandably overtaken by events – one trial leads to new concepts and to different trial designs. This can make us forget why our past approaches were successful – or why they failed.
- Second, we need to understand community resilience – particularly before we worked there. What have their strengths been in dealing with difficult issues? This way, we can draw from those capabilities to effectively engage them. This is an opportunity to get to know people, and make a commitment to best suit their needs. We also have to ensure that stakeholder engagement methods are suitable, consistent, and flexible enough to capture their attention.
- Lastly, and most importantly, we need to move forward with community engagement as community development – the guiding principle of ABCD. Community development approaches can teach us optimal ways to engage people. It's very important to recognize that as we interact with a community, our goal is to ultimately help them succeed in a larger sense: to empower them to improve their health, their finances, and in their social interactions. Limiting our engagement to superficial interactions and recruiting trial participants – instead of supporting a community as it grows – is counterintuitive, counterproductive, and an unsustainable way to support research.
As Community Liaison Officers engage in challenging – but deeply rewarding – work, it is always important to reflect on how our social positioning influences our efforts. Coming from a position of authority, we may be tempted to doubt the abilities of these communities. But it is they that have the answers we need, not the other way around. By using approaches like ABCD we can be more effective in assisting these communities – and helping them to see the value of working with researchers to end AIDS.
Hilda Phiri – Zambia-Emory HIV Research Project
Having worked as a Community Liaison Officer for seven years, I find that my most important role is that of forging a good working relationship between the clinical trials research team and the local community. When you have a good relationship with the community, you are able to identify the emergence of barriers to their effective participation in the research, and work with them to remove these barriers.
Signage for the Zambia Emory HIV Research Project in Ndola, Zambia.
One of the challenges I have observed as part of a clinical trials team, is dealing with the influence of participants' gender on their ability or willingness to participate in a trial. A community's gender norms often pose a significant barrier to willingness to participate. For example, in many communities that I work with, a woman's decision on whether or not to participate in a vaccine trial is often not entirely hers to make – men are regarded as the head of the household with decision-making authority. Furthermore, women's domestic and childrearing responsibilities reduce their flexibility with time, making it hard for them to participate.
There are many other gender-related hindrances that are less evident, and it is my responsibility as the link between the community and research team to keep up to speed in knowing how to identify and find solutions that will make the engagement meaningful and beneficial to all parties involved. It is critical for the research team to ensure equal opportunities and status of participation in research for high quality and effective community engagement.
The 2017 annual Community Liaison Officers' meeting organized by IAVI gave me a new perspective to the depth of gender and gender issues in research. During this meeting, I attended a training – for the first time – on gender inclusion in research. Before the training, I regarded gender as the state of biologically being male and female. I similarly defined gender by the tasks, functions, and roles attributed to women and men in the society. As a result of the training, I am now able to differentiate between the sex of a person determined by biological characteristics of an individual – and their gender which has more to do with the social and cultural concepts of their roles. I also realized that one should not assume the sex of a person by looking at identifiers like dressing code – for example, a transgender who has not undergone transition might be limited when asked about sex and only two options are provided, male or female.
My biggest lesson from the November training was that in order for clinical trials to find a safe and effective HIV vaccine for all members of the community, every gender must be included as participants and stakeholders in the research. As such, it is critical to take a closer look at the social factors that concern gender and that impact clinical research among the populations likely to benefit from the vaccine.
Dancan Otieno – Kenya Medical Research Institute (KEMRI)
I work as a Community Liaison Officer in the HIV department of the KEMRI's Centre for Geographic Medical Research at the Coast. Close engagement with the communities in which research is being conducted enables Community Liaison Officers to identify socioeconomic challenges of different groups of people that may be preventing them from accessing health care or participating fully in clinical trials.
Dancan Otieno of Kenya's Medical Research Institute Centre for Geographic Medical Research-Coast at work.
For three months in 2017, I was part of a team that was tracking the mobile phone and social media habits of 303 people classified as key populations in Mombasa, Kenya. Key populations include female sex workers and gay, bisexual, and other men who have sex with men – individuals who are at greater risk of HIV infection than the general population. The 202 men and 101 women were volunteers in a study that is finding innovative ways of ensuring they have the same access to information and health services available to the general population.
Individuals in these population groups experience numerous psychosocial challenges – including with self-acceptance, and acceptance by family, friends, and the community – leaving them vulnerable and exposed to physical and sexual abuse, and impeding their access to HIV testing, care, and treatment services. The higher risk of HIV infection by at-risk populations in Kenya is not unique. According to the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates, 40 to 50 percent of all new HIV infections around the world may occur between individuals in this group, and their immediate partners.
In the community where I work, men who have sex with men have been known to avoid visiting health facilities where they are likely to be required to disclose details of their sex behaviors and face stigma and discrimination as a result. Often victims of violent acts from this population have been subjected to discriminatory treatment by those supposed to protect them; often police refuse to take statements or provide assistance. In an incident where a clinic attending to at-risk patients was attacked, the police did remove the patients from danger, but later charged them with consensual same-sex conduct (which is prohibited by Kenyan law), and required the clinic staff to carry out forensic anal examinations on them. No legal action was taken against the perpetrators.
With the progressive integration of mobile health into public health interventions, KEMRI sought to exploit social media in engaging members of the key populations virtually and offer social support, including emotional and operational support with practical information and aid needed for health care-related and other real-life problems. This approach is proving useful, particularly in resource-limited settings. Even if not all members of this group could afford a mobile phone, most possessed at least one SIM card that they could insert in a borrowed mobile phone to access information.
The research, which facilitated online health training for individuals in the key populations group, has been extremely exciting as the mobile phone and social media platforms proved a popular forum for discussion of health care issues with and for this group. The study team expects the online interaction to heighten willingness of these marginalized individuals to come forward and access health care more frequently.
The study was not without challenges. Not all volunteers owned or had access to mobile phones and thus could not be reached when contacted. In some cases (24 percent) calls to the volunteers went unanswered even after several attempts to reach them. Also, 60 percent were often outside network areas or had their phones switched off when the research team tried to reach them. It is also not clear how prevalent the use of social media is among key populations.
Going forward, we are still exploring the opportunities to expand the social media approach to include interactive blogs and video-enabled counselling for female sex workers and gay, bisexual, and other men who have sex with men. We believe the mobile phone and social media platform could complement face-to-face contact with the health care provider and offer these individuals who are in an environment with a high risk for HIV infection some of the physical and psychological beneﬁts associated with social support such as self-acceptance and better coping ability.
Max Dorfman – Writer, IAVI
Dr. Steven Wakefield – Director External Relations, HIV Vaccine Trials Network
Dr. Morenike Ukpong-Folayan – Coordinator, New HIV Vaccine and Microbicide Advocacy Society